Me, my health and I

Healthcare is one of the key sectors where personal data innovation can lead to genuinely better outcomes for individuals, providers and governments. Future Agenda, the world’s largest open insight initiative, is embarking on a global project exploring the potential for Patient Centric Data to improve lives and deliver greater efficiency. Director Dr Tim Jones has a packed schedule of workshops in locations including America, Australia, Dubai, UK, Germany and Belgium. He spoke to Internet of Me about the ambitious project.

IoM: Where do you see the key benefits of the idea of Patient Centric Data? Is it for the individual, or more for providers, or is it a mixture of the two things?

Future Agenda Director Dr Tim Jones

TJ: From a patient POV the issue of data ownership vs. access vs. control has many implications from a privacy perspective however talking to healthcare providers, such as hospitals, the ability to join up disparate data-sets in a more coherent way is clearly attractive. In the NHS there is currently a lack of connection between GP data and hospital data and social care data and so there is huge interest in how that could all be integrated.

Then, discussing the topic with the insurance companies, while using data that exists once an individual becomes a patient is clearly of interest, they’re also keen to be able to make the connections between the lifestyle data before you become a patient. So how can all the Fitbit and Apple Watch data best be integrated – because from an insurance point of view the big picture from lifestyle and wider insights on consumer behaviours are of particular interest – not just post diagnosis. In short, many different parties all see different benefits. The challenge is to best understand where and how they all align.

IoM: You’ve talked about the idea of a move from population medicine to individualised medicine – it’s fairly self-explanatory but could explain that idea?

TJ: I think there’s a great aspiration – and we heard this when we ran all our Future of Health workshops around the world in 2015 – for more personalised medicine, and how it can be more focused and therefore have greater benefit. At the moment the costs are pretty high – many see it as a rich country luxury. So the whole push seems to be about getting better data and then how to make it more accessible to individuals and more easily shared between organisations, thus making individualised medicine available to the many rather than just to the few.

Eric Topol wrote a book “The Patient Will See You Now” – a lot of the points he made were around the benefits that can be gained from mass-scale interrogation of data. Interestingly at the same time, he’s also an advocate of decentralised healthcare data: rather than putting everything together in one centralised system. His concern’s is that security and privacy issues can be better managed through more distributed personal data stores. I can see a lot of merit in this argument.

IoM: There’s no more personal information data than our health data and that’s what gets alarm bells ringing with people. We’ve recently the trouble the DeepMind NHS collaboration ran into and then before that the failure of care.data. Well-intentioned ideas they feel like they’ve been badly presented to the public. Is part of your project to explore how to address people’s worries about the possibility of people’s data being misused or used for purposes beyond the initially stated purpose?

TJ: It’s one of the really important issues, and I think there are two elements to it.

Foremost for many is the level of security. But for me the core thing seems to be more about trust – and especially who people trust with their data. This varies from place to place. In Singapore, for example, the government is planning to effectively give every child the equivalent of a Fitbit so they can monitor health signals 24/7. If there is an indication that something’s not right the Fit-bit can send alerts to both the child’s parents and the family doctor. The Singapore nationals we talked to in 2015 were fully behind this asking “who else would we trust with people’s health data more than the Government?” Everyone else in the room from elsewhere in the world was saying ”It would never fly in the USA”, “it wouldn’t happen in the UK” – there’s definitely an anomaly here in terms of the level of trust in different cultures and also in different forms of democracy.

IoM: Trust lies at the heart of all matters of using our personal data and attitudes differ widely between here and USA, for example. There is clearly so much public good to be had here – it’s an opportunity you wouldn’t want to miss for the sake of poor communications of seeing it badly sold to the general public.

TJ: Back in 2010, we had a conversation in Washington on the future of privacy, and talked about privacy breaches and what would be necessary to change people’s attitude to sharing information. Some people from the US Government said they could anticipate, in their words, “a privacy Chernobyl” – a massive data breach that changes people’s views of sharing personal data. When we pushed back and asked where they expected that to come from, they said probably not finance because security is too high, probably not from consumer information because the data isn’t that sensitive, but in the USA, the government’s concern back then was medical records. The view in 2010 that there’s too much information which people care about, and yet the security levels are generally very low. It’s interesting that was seven years ago, and to think how many big hacks of healthcare data there have been since and yet not one big enough to really change people’s behaviours.

IoM: The NHS is beset with problems, creaking at the seams in terms of efficiency and haemorrhaging money. Better use of patient data could, ultimately, be the saviour of the NHS. We talk about cutting services, nurses’ pay etc — this could be the knight in shining armour to save a service like the NHS.

TJ: Better use of data would certainly help. The NHS is a single organisation, so we perhaps don’t have to overcome the same organisational silos that exist in other countries. If you wanted to design a system from scratch where sharing data would provide the greatest benefit, you would probably choose a European universal model, such as the NHS, which is already joined up. One can see that, from a design perspective, the structure of the organisation would easily benefit from more efficient use of information. Spare a thought for the US where there are over 820 different health organisations so, although everything might be increasingly electronic, it will be very difficult to get everyone to share data with each other?

IoM: To come back to privacy, you mentioned in your piece introducing the Patient Centric Data project the potential for things like genetic profiling, and maybe it’s here that peoples’ eyebrows are raised the most. As a medic, a scientist or a technologist, amazing things can be genetically modified and to the man in the street that’s OK if they need some life-saving gene therapy. But with profiling, that data could have unintended consequences further down the line.

Are those ethical questions something else you’ll be exploring?

TJ: Yes definitely. We ran a workshop last year in Germany on the future of surgery which included people from the insurance sector. Within the discussion the whole issue of gene editing came up as well as genetic profiling because if you know the future insights on likely conditions in advance, using technologies such as CRISPR you can edit the genes and can therefore effectively potentially prevent the need for surgery down the line.

We were talking in an open forum with the insurance companies, and the question was being asked “so when you’ve got access to all the genetic information, is it going to change the way you effectively manage risk?” At the moment the insurance industry is agreeing to limit the use of data in order to have a deeper understanding of a medical condition, but they are not using it to change the premiums. That said, as we move forward, some ask if the information is available and insurance companies have access to it, at what point will the business models change?

IoM: At what point do we need regulation to step in there and lay down the law to say if you’ve got this piece of info you can use it for purpose no. 1 but not 3, 5 and 6.

TJ: I think that’s going to be really tricky in some geographies where you’ve got so many competing interests. Technology, regulations, business models and ethical considerations will increasingly be in conflict.

IoM: Do you see this idea of patient-centricity as a kind of human right?

TJ: I think that right now the right to privacy can be seen as quite a wealthy, middle-class discussion. You have to be very careful because it’s clearly a contentious subject, very much on the top of a lot of corporate and government agendas. On the flip side, everyone is keen to improve the efficiency of the world’s healthcare systems. The hypothesis many seem to have is that they can make healthcare more efficient, and in doing so make preventative care more effective, then they can certainly make individual, personalised medicine become more cost-effective and practical. If you can do all that, then, some people would say, then the benefits outweigh the concerns that others may have around data sharing.

IoM: You also used the phrase ‘the internet of me’ when talking about data – what is your view of this concept in context of Patient Centric Data?

TJ: As a concept many people are excited about it, and in a lot of cases, particularly the financial industry, it seems that people are talking about Internet of Me as the great shift that people have been searching for with all the open ID and similar platforms. But, it could also be about the patients and individuals owning their data.

What I’m not sure about – and there are many different views on this, hence partly why we’re doing the project, is what level of control, ownership, access and influence will people want with their healthcare data. There are clear concerns about who has rights over an individual’s information. But if you are ill and are rushed to hospital, you don’t want to have to be asked permission to access your data, you want them to have your data. There is clearly a balance.

Internet of Me is partnering with Future Agenda to report on the Patient Centric Data events and workshops as they happen around the world. Stay up to date with the latest outcomes at internetofme.net and on Twitter – @IoMtweets